Adult Autistic Spectrum Diagnostic Service - the

importance of diagnosis for autistic adults

June 2018

Dr Trevor Powell

Consultant Clinical Neuropsychologist

Berkshire HealthCare NHS Foundation Trust

Content • Context - BHFT’s adult ASD/Asperger’s

diagnostic service

• Recent survey of last 100 clients seen

• Research study: ‘Adults’ experience of an ASD/ Asperger Syndrome diagnosis’

• Effect of ASD diagnosis in adults

Einstein quote

• https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcQkS0NXTmNrsQjcEHfq9V8vnTTxQlNlsuEQ0pO8M-o87RMcdRM1

Background to BHFT Adult ASD service

• PCT – Autism Act 2010

- Referrals – trickle .. stream ..flood. 16 month waiting list – 300 referrals a year

• Housed within Neuropsychology, in a Mental Health/ Community Trust

• heterogeneous, diverse group – 35y – 40% female – 40% FE/employed –57 % MH – 1-1.4% of pop

30

70 100

120

180

250

300

Background to adult service

• Autism Act (2010) – recommends diagnostic service for adults with AS.

• NICE Guildlines (2012) NHS ‘specialist team’ and ‘post-diagnostic support’.

• Global incidence 1% of population (Baird et al 2006. CDCP:USA (2014) 1 in 68 (1.4%)

• Chance encounter with Commissioner – ‘Two for price of one’ - 2010

Department of Neuropsychology

Acquired Brain Injury

RBH – Inpatient rehabilitation

RBH – outpatient rehabilitation

BHFT – OP

CBNRT

ESD

ASD/Asperger’s

Diagnostic Assessment

Post diagnosis 6 week course –

‘Being Me’

Training supervision

Very limited psychological

therapy

ADHD

Diagnosis and Assessment

Post diagnostic psychoeducational 8

week course

Medication –titration monitoring

Training and supervision Limited psych therapy

BHFT’s Asperger’s/ASD clinical team of qualified diagnosticians ( 1.55 wte) –

we are very small compared to others!

• Consultant Clinical Psychologist 0.3 wte

• Clinical Psychologist 0.5 wte

• Speech and Language therapist 0.6 wte

• Psychological therapist 0.15

• Other services in SW (2107): Somerset 3.6 wte, Wiltshire 3.8, Bristol 8.9, Devon 2.5, Somerset 2.9, Gloucester 2.6, Berks 1.55. Average 3.5 wte

• Waiting lists are national problem

Types of Referrals – must have impact!

1. Mental health and legal/special issues – stress - Prioritised - clarification diagnosis- treatment. Often misdiagnosis – ‘female presentation’

2. Late-in-life – stresses – Relationship, work, mental h – personal understanding: “I just want to know” . Tell my mother it wasn’t my fault”

3. Young people in transition – structure - school University - support. Young men: “you cant stay in your bedroom for the rest of your life”

8

After diagnosis – what next? Network

• Information/Advise/ – sign-posting

• Post diagnostic group – ‘Being Me’ – 6 week course (2 hours) - follow up self help group?

• IAPT/talking Therapies – network of supervision

• Psychological therapy – very limited

• We train, run workshops for others BHFT clinicians

9

Last 100 referrals to the clinic – June 2018 1. Age

(Mean =

35.5)

18-25

29%

26-45

46%

46-70

25%

2. Gender Male

60%

Female

40%

3. Referrer GP

43%

From within Mental health

57%

4. Diagnosis ASD/Asperg

71%

Uncer traits

8%

No diagnosis

21%

5.Prev Psy

Therapy

(adult)

Psy therapy

counselling

67%

No psych therapy as adult

33%

Demographics of those given a diagnosis of ASD

1. Employment Empl/ educ

55%

Unemploy’

43%

Other

2%

2. Relationship In relation

37%

No relation

48%

Not recorded

14%

3. Child with

dia/susp ASD

Yes diagnosis

21%

No not recorded

79%

4. Diagnoses

other than Anx

& Dep

Diagnosis EUPD/BPD

13%

Psychosis/B

i-polar,schiz

13%

Diag Neuro

(ADHD etc.)

16%

5. Education Special 10% Normal 49%

Higher 41%

Research paper

Powell, T & Acker, L (2016) Adults’ Experience of an Asperger

Syndrome Diagnosis: Analysis of its Emotional Meaning and Effect on

Participants’ Lives

Focus on Autism and Developmental Disabilities vol 31 (1) 72 -80

Research study: Aim and demographics

• Aim: How participants to new AS diagnostic clinic (2012-13) felt about their diagnosis and in what ways it effected their lives.

• 74 out of 108 returned feedback forms (69%) – 3 months post diagnosis

• Average age 36 years old (M = 51%: F = 49%)

• Questionnaire study

• Mixed Quantitative and Qualitative

• Open free text questions about ‘emotional meaning’ and ‘effect on life of diagnosis

• Thematic content analysis

Main Themes of Qualitative Content Analysis

• Relief

• Positive feelings

• Mixed feelings

• Negative feelings

• Non Clear feelings

• Diagnostic disappointment

Qualitative Themes: Emotional reaction • Theme 1: ‘Relief’

– Word ‘Relief’ appeared 70% of full diagnosis group

• ‘Immense relief … gratitude

• ‘relief to hear it is not my fault’

• ‘relief not to be labeled a “weirdo’

• ‘relief to be able to make sense of a lot of things in my life

• Theme 2: ‘Positive feelings’

• ‘I was happy … pleased’

• ‘I feel validated …

• ‘the diagnosis has liberated me’

• ‘I feel more empowered’

Qualitative Themes: Emotional reaction • Theme 3: Mixed feelings

• ‘Relieved but daunted’ • ‘Angry and sad that it wasn’t picked up earlier • ‘Relieved at first but now realising how difficult it can

be’ • ‘Relieved but feels like confirmation that I’ll never be

normal’ • Theme 4: Negative feelings (> younger people)

• ‘If it’s 1 in a 100, why does it have to be me? I’m annoyed’

• ‘ I was shocked. I didn’t expect to have it’ • ‘It’s a bit depressing - confirmation that I will

never feel ‘normal’ or will not ‘get better’

Qualitative Themes: Emotional reaction

• Theme 5: No clear feelings

• ‘Don’t know how to feel about it’

• ‘I’m unable to label my feelings

• ‘I’m not bothered’ - But relatives say - ‘it’s important for us to know what’s going on …because some of the family just think he’s arrogant and lazy’

• Theme 6: Disappointment at not getting diagnosis

– 33% of subclinical threshold: felt disappointed that no full diagnosis came out

• ‘I hoped for clarity… I was disappointed not to get a clear diagnosis’

• ‘It leaves me in no man’s land stuck in limbo’

Qualitative Themes: ‘Effect on Life’(1)

– Gaining understanding and explanation – (expressed in 83% of responses)

• ‘it puts the pieces together in my mind’ :

• ‘helps because it explains so much …I reflected on my past’

• ‘like the lights being turned on’

• ‘answered 50 years worth of questions’

• ‘Now I know why I have struggled with social situations all these years

Qualitative Themes: ‘Effect on Life’ (2)

• Feeling better about myself because I know its not my fault

• ‘In a very real sense the diagnosis has validated my life

and made me able to accept that I’m not just a failure with a large IQ’

• ‘I am more content with myself because I know its not my fault’

• ‘I don’t have to spend so much time trying to fix myself’

• ‘It has stabilized my mental health’

Qualitative Themes: ‘Effect on Life’ (3)

• Support

• ‘It helped me get study support at University’

• ‘It opened the way for tangible gains … benefits’

• ‘… work must now make reasonable allowances’

• ‘ ‘I’m concerned about a lack of support’

• Social interactions – both positive and negative

• ‘work understands me more know’

• ‘My family understands me more now’

• ‘My boyfriend treats me differently now’

• I’m more aware of being scrutinized

Conclusions from research • ‘Relief’ described as most common emotional reaction

(70%).

• Positive effect on lives - (85%) ‘understanding and explanation’, ‘an alternative to self blame’. ‘Life changing’

• In many cases diagnosis triggered self-reflection including regrets about what could have been.

• Mild, reduction in anxiety and depression 3m (not sig)

• Care with subclinical group; ‘diagnostic disappointment’.

Letter to Ann last week (1)

• I wanted to write and thank you enormously… I am about to start a new job that I chose with reference to your recommendations and, for the first time in my life, feel confident that I will have an occupation that isn't harmful to me. The job is a Lectureship in Actuarial Science at the University of … I will have about 8 contact hours with students a week and the rest of my work will be self-determined in my own private office where I can control the lighting… etc.

Letter to Ann last week (2)

• Although being told that I likely had Asperger's was a relief, it was also a shock and I went through a difficult couple of months emotionally. The diagnosis felt like a life sentence and crystallised my feelings of not knowing who I was - if I've been "pretending to be normal" all my life, who am I? If it's Asperger's, no amount of trying hard will cure it etc . With time, however, things have improved substantially. Implementing lots of sensory techniques has made a huge difference to my mental health and helped to see how much of what I thought was "hysteria", mania, or anxiety was actually a meltdown.

Letter to Ann last week (3)

• I have become an avid knitter…I carry a muslin bag of coffee beans around with me and a little bottle of frankincense essential oil. I go nowhere without my sunglasses and pink noise. When I am overwhelmed by something I remind myself it's just a meltdown rather than some sort of neurotic attention-seeking behaviour for secondary gain. Makes it easier to forgive myself.

• Anyway I just wanted to say thank you for a life-changing diagnosis and for giving me the tools to find a healthy job and get the support I need.

Post diagnostic support • ‘Being Me’ Group – 6 weeks, 2 hours, structure,

course booklet, questions + discussion + video

• Understanding ASD, sensory, disclosure etc

• Meeting others in same boat

• Client satisfaction rating high (4.6/5)

• Satisfaction with Life improved significantly

• Other

• Some people don’t want or need support or follow up

• Post diagnostic individual sessions can be helpful – but limited resource

• One size doesn’t fit all – often need not psychological

Afternoon Group Exercise: Support

• Discuss what the three top current needs are for yourself, your child or your young person, with your partner.

• If you had one wish, to meet one of these needs, what would it be?

Conclusion 1 – Effect of ASD diagnosis • For client : Diagnosis brings ‘relief’, ‘positive

feeling’, ‘validation’, ‘reduces self blame’, understanding and acceptance’,

• Mental health/ therapy/treatment : diagnosis helps clarify best treatment options – ‘stabilises mental health’, ‘don’t have to keep trying to fix it, shift to acceptance of who I am’. Saves money on inappropriate treatment. Often therapy based on misdiagnosis, e.g. BPD, EUPD, (particularly female presentation) Schizoph. Modify environment if in hospital

Conclusion 2 – Effect of ASD diagnosis

• Education – improve opportunities once recognise ‘disability’ – executive skills difficulties (subtle) – in exams - tailor appropriate support – academic, social

• Employment – people keep jobs, work with strengths, ‘reasonable adjustment’, find better suited jobs? Report summary – conscientious, detail

• Relationships benefit – understanding and acceptance, realisation they are ‘not just being awkward’. Within family – better understanding if child has ASD – strengthen strong, weaken weak?

Thank You